Hi there! For those that don’t know us, we’re the Bacas. We have 3 beautiful daughters, Graycee, Saidee and Paislee or as we call her, Button, because she’s cute as a button. Saidee and Paislee were adopted on 12/4/2024. In 2024 we learned Paislee has a very rare genetic condition called Chung Jansen Syndrome. It is actually a deletion in the PHIP gene in her DNA. She has 2 deleted genes but at this time we only know what 1 is. There is an opportunity for us at Boston Children’s Hospital where the doctors who founded her genetic condition are hosting a convention for families with Ching Jasen syndrome. The convention is July 23-25 and we have gone through the appropriate insurance channels to get most of this covered with some still out of pocket medical expenses. Paislee has a 1:1 appt with Dr. Chung on 7/20 which again- some is covered and some isn’t!  These appointments are answered prayers for us to hopefully understand her condition more and help be apart of research for other families. When Paislee was diagnosed she was # 443 in the WOLRD. Now they are saying there are about 700 people world wide with this diagnosis as of early 2026. There is very little knowledge, education, or resources for kids and families with CJS. 

We will be in Boston 7/19-7/26. We did get our flights covered by a grant program so we are still raising money for our rental car, food and hotel! Thank you for your generosity. We won’t have down time now, so if you read our previous post we won’t have down time since they moved Paislees appt to 7/20 instead of 8/3!!

Thank you for your continued prayers!